Sunday, July 29, 2012

Back from Vacation

by Chuck Jones

I'm sure you didn't even know I was gone but I'm back off vacation now. Our newest member of the staff, Lauren, has been doing a terrific job of updating and monitoring the blog for me while I was out cavorting the past month across the western U.S., through Canada, and into Alaska on my motorcycle. North America is an awesome continent and some of the most absolute, fantastic, jaw dropping scenery can be experienced traveling north west.

Last week we loaded up the van for a camp in Denver, Colorado July 27-29. This same weekend we had a camp for Rockford, Illinois.  The Denver camp which is actually in Allenspark, Co. at Highlands Retreat Center, is sponsored by Centura Health which has multiple hospitals.  Most of the campers and volunteers came from the Denver area. The Rockford camp is sponsored by the four hospitals in the Rockford area.  This camp is held at Lutheran Outdoor Ministries Center in Oregon, IL. We supply three, four, sometimes five Peoria area staff and volunteers as camp and program directors, and various other administrative duties but the rest come from the sponsor's area. As you can see we rely very heavily on sponsor volunteers to make these camps successful. I have been helping along with these volunteers for eight years and I can tell you you won't find better, more enthusiastic, helpful people anywhere. We could not succeed without them.   

Coming up next we have a MEGA Brain exhibit at the Coral Ridge Mall in Coralville, Iowa August 3 and a four day family focus stroke camp at the Living springs camp ground near Lewistown, Illinois.  

Next week and in the near future I'll be posting some more short stories written by Chuck Hofvander.  Chuck is a stroke survivor and fellow camper. This time he is writing some short stories about those who come to camp. Not just survivors and care givers but staff, music therapists, etc. They are being published on this blog with permission from those people he is writing about.

If there is any topic you'd like to see covered on this blog please let me know. I'm always looking for new material no matter what the subject. You can contact me at cjrley at gmail dot com (I hope you know how to put this together correctly). I have to spell that all out, you see, to make it difficult for the auto-troll hacking programs to get a hold of it and spam me to oblivion.

Sunday, July 22, 2012

The Real Rehab Story by Marylee Nunley

by Marylee Nunley

In September 2001 on a sunny Sunday afternoon my husband John collapsed from a stroke.  To this day, I do not know how I recognized it as a stroke, but I calmly said to him "I think you've had a stroke, I'm going to call 911".  We were in the E.R. within 20 minutes.  The first few weeks were kind of a blur.  Confusion, agitation, speech problems, vision problems, right-sided weakness, no food until they could be sure he could swallow…………..what’s with that!  This intelligent, warm-hearted man reminded me of a frightened little wild-eyed child and could hardly speak an intelligible word.  I was thrilled on day three when he got angry with a nurse and said "this is bullshit", only to be told that it was an "involuntary response" and he hadn’t regained his speech.  I still didn’t know he was going to have to learn to speak again, word by word and that he wouldn’t just wake up one day and be able to talk.

It wasn't until a few weeks passed that I began to recognize the seriousness of his injury.  I kept thinking he’d just get better and be alright.  Then, rehab which gave me such a sense of progress.  After numerous evaluations of functioning, the team decides the patient’s needs.  As his caregiver and head cheerleader, I am so excited that we are getting down to business and on a path to recovery so we can resume our normal life.  Speech therapy is going to help him with his expressive and receptive aphasia.  Let’s get going. The first speech therapy session will always be vivid in my memory.  I accompany my dear husband to a little room where Jennifer, his inpatient speech therapist, sits him up to a table.  She brings out some simple pictures or common objects.  First is a picture of a table.  John responds with some sound that wasn’t at all like a word and then kind of smiled as if to say “was that right”.  Jennifer calmly said “table” and John obediently babbled some non-word back.  As we went through that first set of cards, there were only a few objects that John could recognize and speak a word close enough that we knew what he meant. I remember feeling ever so embarrassed that he couldn’t repeat the words.  I wanted Jennifer to know that he was intelligent and not some dummy.  Even after a number of speech therapy sessions, I’m still in fantasy land thinking, “Well, this will probably take a few more days”. 

After speech, the next part of the day involves physical therapy.  Here is where they begin teaching John how to walk again.  He had significant sensory deficiency on his right side, and couldn’t feel his right arm or leg.  They taught him to walk like they would an amputee, to watch his leg because he couldn’t feel it touch the floor.  John was strong and determined and always accomplished more than was expected. Once again, I am so proud and in some part of my mind, thinking, “This will probably take a few days”.  Next we head to occupational therapy.  This is where they begin to help with “life skills”.  They start by having him take little pegs out of a pegboard and drop them in a little bucket.  I’m not sure what life skill this is, but it’s o.k., because “this, too will probably only take a few days”. 

What life skills really means to a stroke survivor is learning again which utensil to use when eating, how to shave, shower, and various other routine day-to-day activities. They are things that you and I do without even thinking.  In fact we don’t even know they require brain functioning to complete.  John would pick up his knife and try to tackle the soup or pudding.  He didn’t even recognize why the knife didn’t work.  I would discreetly hand him the spoon and say, “this is your spoon, and it will work better”.  He often would look at me and I knew he wanted to try and say “spoon” so I would hold it up, say “spoon” and wait for his response which might be “spoon”, or maybe “poon”, or maybe “cup”, or some other mixture of sounds.  

 Life skills also involve self-care.  John’s first shower upon returning home was quite the challenge.  I had set everything up for him and was standing nearby.  He stepped in the shower and stood there.  He knew how to test the water with his good hand (they taught him that in life skills) so he started the shower and then just stood there.  As I watched, I recognized he seemed puzzled, so I cheerfully directed him to the soap.  He wasn’t sure what I meant, so I lathered up the washcloth and began to wash him.  He understood and took over, whew, that’s better.  Next I hand him the shampoo.  I got the same puzzled stare before so I said “shampoo”.  Same blank look, so I took his hand and poured a little shampoo into it…..there’s that blank look again.  It wasn’t until I physically took his hand and placed it on his head and started the washing motion that he understood what we were trying to do.   It was several weeks of my assisting him with the shower before he could accomplish this task alone.  This same struggle came with each life skill.  Brushing teeth, shaving, eating, dressing, combing hair, all become major challenges.  By this time, I’m finally realistic enough to now say “this may take a few weeks” rather than a few days.

The story could go on and on with rich entertaining stories of triumphs and challenges, successes and failures, laughter and tears.  What I know for sure is that for a stroke survivor and their caregiver, it doesn’t “take a few days, weeks, or months”, it takes a lifetime.  John is a man who has worked amazingly hard to get better.  He has gained the skills to help around the house and now he is driving, mowing, and interacting weekly with grandchildren. He feels like God has called him to help others who have suffered disabilities which we accomplish with our camps.  His speech is still evolving and he can’t always retrieve the word he’s searching for, but on a good day when he is in command of the conversation, you would hardly know he’s had a stroke.  

So, this is a story of stroke survival.  It all starts with rehab but rehab never really ends.  It doesn’t just “take a few days” it takes the rest of your life.  It requires drive and determination, patience and understanding.  It includes tears, anger, frustration, confusion, and despair.  I wouldn’t have wished this on my worst enemy, but now, wouldn’t trade the experience for the world.

Stroke………rehab………life goes on.  It is forever changed, but it can be good.

Sunday, July 15, 2012

Jan's Journal Part 3 - Stroke Risk Factors

Jan Jahnel RN, CNRN is the Stroke Nurse Coordinator for the INI Stroke Center and INI Stroke Network at OSF Saint Francis Medical Center in Peoria, Illinois. Jan has 14 years of neuroscience nursing experience with the last five years focusing on stroke processes and care. Her commitment and dedication has been an important part of stroke camp. She works very closely with Retreat and Refresh Stroke Camp, attending many weekend camps, helping with some of our fund raisers, and providing us with technical knowledge about strokes. 

This is an article she wrote during one of our fund raisers. Yes, she is a great multi-tasker.

80% of strokes are preventable. Understanding your risk and managing them can reduce your risk of stroke. There are two types of risk factors: uncontrollable and controllable.

Uncontrollable - uncontrollable risk factors are...ones you have no control over, like:  age, sex, race, heredity, and prior history of heart attack or stroke. Since these put all of us at risk for stroke without any control it is important that we know and pay attention to the controllable ones.

Controllable - controllable risks are high blood pressure, diabetes, high cholesterol, atrial fibrillation, smoking, obesity, and physical in-activity.  These can be controlled with medical management, medications and lifestyle changes.

Know your risks, talk to your doctor about your personal risk factors and make changes necessary to prevent a stroke. It is never too early and never too late to start.

---EDITOR'S Note:
I'll bet you wondering what Atrial Fibrillation is. Here is Wikipedia's definition:

Atrial fibrillation 
From Wikipedia, the free encyclopedia

Atrial fibrillation (AF or A-fib) is the most common cardiac arrhythmia (irregular heart beat). It may cause no symptoms, but it is often associated with palpitations, fainting, chest pain, or congestive heart failure. AF increases the risk of stroke; the degree of stroke risk can be up to seven times that of the average population, depending on the presence of additional risk factors (such as high blood pressure). It may be identified clinically when taking a pulse, and the presence of AF can be confirmed with an electrocardiogram (ECG or EKG) which demonstrates the absence of P waves together with an irregular ventricular rate...

 Atrial fibrillation may be treated with medications to either slow the heart rate to a normal range ("rate control") or revert the heart rhythm back to normal ("rhythm control"). Synchronized electrical cardioversion can be used to convert AF to a normal heart rhythm. Surgical and catheter-based therapies may be used to prevent recurrence of AF in certain individuals. People with AF often take anticoagulants such as warfarin to protect them from stroke, depending on the calculated risk. The prevalence of AF in a population increases with age, with 8% of people over 80 having AF. Chronic AF leads to a small increase in the risk of death. A third of all strokes are caused by AF.

If you have any questions or answers we'd be happy to hear from you.

Sunday, July 8, 2012

What? Cows on an Airplane

 Chuck Hofvander is a stroke survivor and fellow camper. He has written many essays since his stroke and here is a more humorous one.  

What? Cows on an Airplane
by Chuck Hofvander

Maybe I’ve got a thing about cows! Just let me think. I rode a calf in Iowa: or at least tried to, cows chased me in South Dakota and my mistaking a bull for a cow: they look alike don’t they? 

Wait a minute maybe Howie does too.
I was on a trip to San Jose California with Howie, my boss. The Hyatt hotel had a mural of Herford cows grazing in the field in the dining room. When I say mural it means that the cows were not just large but very large, not just very large but staring at the patrons.  Cow’s in the dining whatever genius thought of that? 
The first thought that came into my mind was milk, hamburger and then to steak’s. I looked around the dining room and didn’t find other farm animals. What about chickens, pigs, lamb, and what about those that couldn’t drink milk. Why were they excluded?
One night we had dinner among the cows and Howie went to the bathroom and I remained at the table. Minutes passed then I heard (herd) a faint mooing sound. Is the dining room wired for sound?  Then the mooing began to get louder. Howie returned to the table and the mooing stopped. Was it Howie? He always up to something but I didn’t ask him.  
We ended our trip and on our way back to Chicago Howie and I were on a full 767 flight.  The plane landed and the pilot came on and said, just as usual “please remain in your seats until we’re at the gate”. That was a signal to everyone to jump out of their seats and crowd the aisles while the plane was still moving. 
Howie and I remained seated and then I heard a cow mooing. Then I heard, what must have been a rancher saying “The fastest way to move Cattle is slowly”. Everyone looked startled and looked around. Cows in the passenger compartment of an airplane? Why hadn’t someone seen the cow? The flight attendant’s must have seen the cow and the rancher as they served coffee?  I thought it must be Howie. 
The cow sounded frantic, like it was on way to the slaughter house and then I heard “Get along little doggie”! What?  It must be Howie.  How could a cow and a rancher get thru a crowed airport without someone asking them what they were doing, how could they get thru security, wouldn’t the person at the check-in counter stop the cow and the rancher, and finally the flight attendant at the entrance stop them as they entered the plane? Were we to flight to Chicago or Abilene Texas? 
It was Howie! We were seated in the center isle and Howie was crouched over making the mooing sounds and saying “Never kick a cow patty on a hot day” and “It rained like a cow peeing on a flat rock”.  Howie straightened up but everyone who came near our seats looked at us.
All this taught me several lessons. First I’ve got a thing about cows, second I’m suspicious of other farm beast’s, third always rise up from your seats when the airplanes landing; to avoid cows and whenever possible travel with Howie. 

 Please feel free to post any comments or questions by clicking on the red word Comment following this article. If you have any questions or comments about anything that you would like to share with us please feel free to do so on any of our articles. Don't worry about being off topic. Any question or comment is welcome on any of the article's comments section.

Sunday, July 1, 2012

Strike Out Stroke

After you read this posting go here:
to see this year's article about our upcoming May 23, 2013 Strike Out Stroke (TM) event, then go here to see the actual Strike Out Stroke (TM) event:

On Sunday, June 10, Retreat & Refresh Stroke Camp held its fourth annual Strike Out Stroke event with the Peoria Chiefs.  We had perfect weather and a great turnout of survivors, caregivers, friends, and family.  We hung the 68 winning posters from the 5th grade education poster contest on a fence at the game for people to look at as they walked around the ballpark.  Before the game, Marylee Nunley, Executive Director of Retreat & Refresh Stroke Camp was interviewed on the field.  She educated those in attendance on the warning signs and symptoms of stroke.

Lindsay Kwok, the grand prize winner of the poster contest, flew in on the Life Flight helicopter, landed in centerfield, and then got to throw out the first pitch of the game.  It was very exciting!

Just minutes before the game started, nine stroke survivors took to the field with the position players for the Chiefs as part of the "Dream Team" and were acknowledged as being stroke survivors. 

The game went off without a hitch, and the Chiefs ended up with a win!

You will be seeing a lot more about Strike Out Stroke in the future. We are working on ways to expand the theme throughout the country. Please watch for developments in 2013.